Local data sharing is key to fighting pandemics

Invest in local data sharing projects for better pandemic preparedness, health data experts urge

21st July 2020

Northern health data experts call on the Government to invest in local data sharing to help recover from COVID-19 and prepare for future pandemics.

Trusted health data networks set up by the Northern Health Science Alliance (NHSA) Connected Health Cities (CHC) project now exist in the North of England and could be used to flow data to help local communities take swifter, more decisive actions in tackling crises such as COVID-19.

Dr Séamus O’Neill, Chief Executive at the NHSA, said: “CHC is a proven model of work that has gained the trust of millions of people across the North and paved the way for 10 million shared health data records.

“As lockdown measures start to become localised, the importance of regional data sharing innovations should be recognised, and invested in, by the Government.

“CHC gave us ways to work locally for regional and national benefit. By applying this learning and investing in the next steps of the project, we can help ensure the health and social care systems are better prepared for future health crises and in a position to react and respond quickly based on the needs of the people and systems locally.”

Leading academics and clinicians from across the North of England, who spearheaded the CHC programme, are calling for investment in the next phase of the local data sharing project which will build a resilient network of Civic Data Co-operatives that would be vital in fighting future pandemics.

The Government-funded CHC pilot programme, which came to an end in March, put people at the heart of how their data was used. By building trust with both patients and health and social care organisations locally, the programme, which was delivered by the Northern Health Science Alliance (NHSA), was successful in linking 10 million health records in the North, creating at least £30 million of investment and has shown early indications of at least £150 million worth of cash savings in the North of England’s NHS and social care every year.

Professor Iain Buchan, Executive Dean, Institute of Population Health, University of Liverpool, Architect of CHC, said: “Civic partnerships of NHS, local government and academic organisations are sufficiently close to resident communities to earn their trust for sharing data at scale, to analyse the data in context and to understand how to act on the intelligence. When these partnerships are sufficiently large – around 3m population coverage – they achieve economies of scale in data and analytics without breaking beyond the essential diameters of public trust, contextual understanding and manageable actions – COVID-19 has demonstrated the need for a national grid of these civic data cooperatives.

“There was a disconnected early response to COVID-19 with NHS, public health and local government agencies out of sync, relying on national information systems that didn’t talk to each other. More recently, I have seen localities ramping up integrated data and intelligence to improve system-wide responses to COVID-19, especially in North England drawing on CHC experiences and prepared communities.

“For better pandemic preparedness there needs to be a national grid of intelligence-led civic health and care systems – each with a critical mass of data analysts working together to understand their local system, combining NHS, public health, social care, research and other perspectives. Such a grid would afford distributed resilience for the UK, and a more powerful health data/tech innovation network.

“Never in our lifetime have we seen a pandemic that has had such a profound impact globally in health, economic and societal terms. Inequalities are accelerating not only from the unequal impacts of COVID-19 but also from the unequal benefits of the 4th Industrial Revolution. UK policies for equitable recovery from COVID-19 should consider the greater needs of the hardest hit regions, and, in the case of NHSA, their readiness to develop the digital health sector at civic-scale.”

The call comes following an online NHSA roundtable with leaders in the NHS, public health, academics and policymakers to discuss how the CHC health data sharing project across the North of England could help inform the national response to COVID-19.

The group is calling on Government to invest in the next phase of the CHC programme which will focus on building a network of Civic Data Co-operatives (CDCs) to scale up and roll out the value delivered and would allow data and data scientists to be mobilised at critical mass in each regional health system to deliver real-time evaluation and smart implementation of innovations.

Professor John Ainsworth, Professor of Health Informatics, The University of Manchester and Director of CHC Hub, said: “CHC was incredibly successful at bringing organisations together across the health and social care system in a collegiate manner and gaining the trust of the people they serve. There is a real opportunity to capitalise on this future by acting locally, building trust, and building networks so we can form a collective that’s greater than the sum of its parts.

“We have already demonstrated that the CHC model works; a data driven approach to service design and quality improvement delivers benefit for providers and for patients. With follow-on investment we can accelerate it and create even more, lasting impact. The time is now for Government to move away from the national ‘top down’ approach and to invest in locally-driven models.”

Dr Amanda Lamb, Director of Health Innovation Liverpool at University of Liverpool and Chief Operating Officer of CHC, added: “CHC was never solely about data. It was always about people and organisations working together to benefit the population with data as the substrate. During the pandemic we have seen data used incredibly effectively but the messaging from Government could have been clearer at times. Involving the public more in the development of the narrative and solutions could have been used to greater effect. This was one of the key achievements of CHC: we engaged, we listened, we acted and involved the population in the co-creation of solutions. This helped us to understand why one national, centrally controlled data programme would not work.

“In CHC we have the blueprint to a network of multiple, different, locally contextualised operations to formulate a national grid of learning health systems driving innovation for public benefit.”

CHC leaders continue to use the infrastructure developed during the project to support local work in response to COVID-19. The database developed as part of Connected Yorkshire’s urgent and emergency care project, which focused on reducing demand on emergency care, is being used to understand the patterns of A&E referrals in urgent care across the region of 5 million people.

Connected Bradford, which used linked datasets to establish a comprehensive review of the needs of 700,000 citizens, is also being used to gain an understanding of the long-term complications in COVID-19 patients. In addition, local data is also helping to understand vulnerability in children.

Professor John Wright, Director at Bradford Institute for Health Research and Director of CHC for Yorkshire and Humber, said: “We have some of the worst health outcomes in the North of England but there’s an imbalance between research investment between the South East and the North. COVID-19 has shown very starkly that it has hit the poorest the hardest and the long-term collateral damage is only just beginning. While people are getting back to normal, the level of inequality, not just in terms of impact of COVID but in terms of the loss of what we’re doing across the health service as a result of the pandemic, is going to become dramatically greater.

“In the background, we also have an epidemic of non-communicable disease such as heart disease, stroke, hypertension, obesity, and mental health, that we don’t apply a targeted data sharing approach to as we should do. We need to apply lessons from an acute epidemic like COVID-19 to a chronic epidemic. In the North, our strength is in our data, our public guardianship of that data and the trust we build with the people, but also how we work across a federated system to use that to make impact.

“We know the CHC model works and there is already fantastic work happening because of the foundations laid during the pilot. But never has the time been more urgent for us to seize back control and to build on what we’ve been doing over the last four years and continue to work together as a northern powerhouse for the benefit of people locally, regionally and nationally.”

CHC brought together 20 Acute NHS Trusts, over 500 GP Practices, 10 universities and the northern Academic Health Science Networks (AHSNs) to innovate and improve care through joint working from March 2016 to March 2020.

The project, delivered through a coordinating hub in Manchester and regional centres covering the North East and North Cumbria, North West Coast, Yorkshire and Humber and Greater Manchester, put people at the heart of how their health data was used to great success.

Connected Health Cities was a £20m, four-year pilot funded by the Department of Health in 2015. It recognised the potential value of health data, with appropriate care system and population engagement, to both drive improvement in the provision of care and to create a research and economic asset across the North that was understood and supported by its people.

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